Wishing Well To My Fellow Black Press Columnist, Now Struggling With ALS (Parts 1 and 2)

Very sad news. I’m glad he has the strength of his faith and his family around him.
When I began paying attention to Black press (as in, weekly Black newspaper) column writing in the 1990s, his column was everywhere.

Part I of a Two-part Series: ‘First, You Cry’: Black Press Columnist Battles for Life After ‘Devastating’ Diagnosis

(TriceEdneyWire.com) – For the past 22 years, Jim Clingman has published his cutting edge “Blackonomics” column in Black-owned weekly newspapers around the country. The column mainly pushes for economic justice, which he views as a core necessity for Black progress in America.

But as this award-winning columnist, author of four books, college professor, entrepreneurship expert, speaker and businessman continues to fight with his pen, Clingman, a Cincinnati, Ohio native, is suddenly engaged in an unexpected and devastating personal battle. It is a battle for his own life – and quality of life.

Eighteen months ago, doctors diagnosed Jim Clingman with ALS, the gradually debilitating disease that leads to partial or total paralysis of the body and a most often two to five year lifespan after diagnosis. It is the ailment that has become known as “Lou Gehrig’s disease”, named for the professional baseball player that died from it in 1941 at the age of 37.

Many have learned of ALS from the so-called “ice bucket challenge” that has raised more than $100 million to research the mysterious illness. Despite the popularity and positive results of the challenge, it can effectually belie the physical, emotional and mental suffering of those who have been diagnosed with it.

“We should not let the celebrity and the novelty overshadow the seriousness of this disease. It’s a terrible disease,” Clingman says in an interview with the Trice Edney News Wire. “It’s a terminal illness. They just kind of throw up their hands and try to figure out what they can do to help you manage because there’s no cure. People who know, know that it’s devastating. People who don’t know, they may ask what does that mean?”

According to the ALS Association (ALSA.org), here is what it means:

“Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

If that’s too clinical, Jim Clingman, in his vintage, matter-of-fact style of communicating, makes it simple: “It’s like having a stroke one neuron at a time,” he says. “It’s very slow. It’s subtle. But it’s determined. It’s deliberate. It’s a literal assault on your body. And every day you get up you do inventory: ‘Let me see, is this still working okay? Is that still working okay?’ And you know we have billions of neurons, so it’s like a death by a thousand cuts. A slow process, but a deliberate process.”

So far, the creeping symptoms which he first noticed six years ago in 2009 with a weak foot that caused him to stumble when he tried to bowl, have gradually grown into the loss of his ability to walk without help from a walker to sturdy himself. The weakened muscles in his feet and calves have also ended his beloved 35-year bicycling activity. But because the disease is so mysterious, he recalls how just getting to an actual diagnosis was literally a roller coaster.

First, in 2010, he went to a doctor who said he had a spinal stenosis, which means a nerve in someone’s back, protruding through the vertebrae and irritably rubbing on the bone.

The doctor said, “it’s pretty simple to fix” by shaving the bone so the rubbing couldn’t happen, Clingman recounts.

Attempting to avoid the surgery, he went through a few months of therapy first. But, then he noticed that his left calf was becoming smaller than the right and that his left leg had become weaker.

So, in November 2011, he went ahead and got the back surgery, which healed in a few weeks. But, it was his wife, Sylvia, a nurse, who said “it didn’t look like my walk was getting any better…I had back surgery for nothing.”

Then, “I did every test known to man. I went to two neurologists who just threw up their hands and said, ‘I don’t know what this is.'”

Finally, a doctor gave him a battery of tests, “An MRI, cat scans, blood work. He had to rule out everything: Cancer, MS, Parkinson’s disease.”

Then, on Aug. 23, 2013, he received the devastating news. For a healthy man then 69, an avid cyclist who could ride a hundred miles on his bicycle, the diagnosis literally rocked his world.

“I’ve never spent a night in the hospital, never had a broken bone, never been sick other than just a cold. When I was a child, I had measles and chicken pox, that kind of thing. But, I never had anything lingering or wrong with me physically. I’ve always been pretty active, even up to a couple of years ago…So, this was like devastating, you know.”

Now, 18 months since the diagnosis, Clingman is beginning to feel the effects in his upper limbs.

“I can feel a little something in my fingers and arms feeling weaker than normal. As I sit here and write, I sometimes miss the keys, making more mistakes.”

And then there’s the mind-numbing prognosis. Typically, ALS patients live between two and five years after diagnoses, according to the National Institute of Health.

But Jim Clingman – and his family – are anything but typical. Alongside his wife, Sylvia, a neo-natal intensive care nurse, and his daughter, Kiah, a graduating senior at the Howard University School of Communications, this family is standing on their spiritual faith in God while doing all they can in the natural to fight.

“It’s a day to day thing. I have to put it like that. I try to look at the positives like the fact that it started in my foot instead of in my face. It can start in arms, hands, etc. The doctor told me, ‘If there’s anything good about this it’s where it started in you because it started in your foot and has to work its way up.'”

The ALS Association reports that about 30,000 people in the U. S. are currently diagnosed with ALS. About 5,600 people are diagnosed with it each year.

Meanwhile, there is only one drug for ALS that is approved by the U. S. Food and Drug Administration (FDA). It’s called Riluzole. A blue bottle of it sits on Clingman’s desk in a den otherwise surrounded by photos of loved ones, books – lots of books – of course his computer, and his walker nearby.

Riluzole “slows progression of ALS but does not cure it,” according to NIH. The agency also reports studies that conclude that Riluzole only prolongs life for a range of months.

“It keeps your diaphragm from collapsing, which would prevent breathing,” Clingman explains. But, other, even better medications are being studied.

The New York Times reported in February this year that a new ALS medication called GM6 – still in experimental stages – has now shown to “dramatically slow down the progression” of ALS. The article reports that after using the drug, at least one man “showed small improvements in speech and swallowing, and certain proteins used to signal disease progression actually moved back toward the normal range.”

But, the article, written by Angelina Fanous, a 29-year-old who has been diagnosed with ALS, comes to a similar conclusion that Clingman expressed in the interview.

Fanous writes, “Unfortunately, given the length of time it takes to win approval for a new drug, it will be about 12 years, $4 billion and many more deaths before GM6 makes it into my medicine cabinet. I will be in a wheelchair, using a feeding tube, or dead by then.”

Genervon, the maker of GM6, which it calls GM604, posted a press release on its website March 21 saying it met with the FDA in February and “we have filed a formal request for the Accelerated Approval (AA) Program and are now waiting for a final decision.”

Meanwhile Genervon stresses, “In the U.S., it is illegal to access GM604 without FDA approval or outside a clinical trial.”

The petition appeals to U. S. Senator Lamar Alexander (R-Tenn.) who chairs the Senate Committee on Health, Education, Labor and Pensions; Sen. Patty Murray, the ranking Democrat on the committee; as well as Janet Woodcock, the doctor who is director of the FDA’s Center for Drug Evaluation & Research. About 18 other people, including senators and FDA administrators are also listed.

ALS notwithstanding, Jim Clingman is up for this fight. He is well aware of the petition and hopeful that millions will sign it and that the powers that be will listen.

“The FDA and the bureaucrats won’t allow it to be used…The petition asks them to accelerate the process.”

But, as he waits, he and his family are leaning on their faith, which right now, is everything.

“If I didn’t have that Hazel, I’d be a wreck. I know it. Doctors give death sentences, but God gives life sentences – eternal life.”

He recalls his initial response after receiving the diagnosis, captured in his now daily journal writings. In a nutshell, he says, “First You Cry.”

Next Week, Part II of ‘First You Cry’: Jim Clingman – His Family, Their Faith and Their Fight

Part II – ‘First You Cry’:

Jim Clingman, His Family, Their Faith and Their Fight

By Hazel Trice Edney

Jim and Sylvia Clingman

Jim and Kiah Clingman, now a graduating senior at Howard University.

(TriceEdneyWire.com) – It was the perfect plan. After living in his native Cincinnati, Ohio for all of their 22 years of marriage, Sylvia and Jim Clingman were preparing to move to another state and start a new life.

Mrs. Clingman, a neonatal intensive care nurse manager, had accepted a new job at the Greenville Memorial Hospital in Greenville, S.C., one of the nation’s best cities for retirees, according to AARP. In the comfort of their new home in a beautiful quiet subdivision, Jim would continue writing his national “Blackonomics” column for weekly Black newspapers and serve as a consultant to his clients while also enjoying bicycling, one of his favorite pass times, along the rolling hills of Greenville.

Kiah, their only child, was independent and away at college most of the time. The popular student leader and graduating senior at Howard University was focused on her career in advertising and marketing.

“My goal was that we would enjoy a place where I’d anticipated, number one, starting a new life,” recalls Mrs. Clingman. “A warmer place, where I would take up some cycling with him, where we would start our cycling together. Where we would grow old and start our downhill retirement at least enjoy being here together.”

Having met Jim, who is 19 years older, more than two decades ago at a reception in her native city of Chicago, Sylvia was smitten by this distinguished gentleman. Even now, she seems to blush when she speaks of how debonair he is in a suit. “Jim is the only man to me who looks just fabulous and handsome in a suit. No one can wear a suit like Jim.”

Though they only spoke a few minutes at that event where they met, he was obviously equally impressed. A few weeks later, he called her at the hospital where she worked and the rest is history. They married on Dec. 15, 1991, and were now preparing to start a new season in their lives.

But, that dream took a sudden and traumatic turn 18 months ago when Jim Clingman was diagnosed with ALS, so-called “Lou Gehrig’s disease”. It is the neurological illness in which the normal prognosis is that the patient gradually becomes paralyzed and then dies within two to five years, although some have lived much longer and some patients have even seen their symptoms stop, according to the ALS Association.

While Mrs. Clingman had moved ahead to start the new job as her husband prepared to join her, his weakened left foot and calf continued to grow worse despite surgery and batteries of tests. Finally, there came the devastating diagnosis August 23, 2013.

“We put her on speaker phone,” he recalls. “She just lost it. I immediately got in the car and drove down there and just spent a couple of days so we could both be together and just accept it.”

“Accept it?” How does one “accept” a prognosis like that of ALS? According to Jim Clingman, “First you cry.” But, then what?

Contemplating the question, he speaks slowly, thoughtfully, a man who has never even spent a night in a hospital, now trying to wrap his mind around what has become the spiritual test of his lifetime. Miraculously, he has found blessings, even in the midst of this tragedy.

“It’s a day to day thing. I have to put it like that,” he explains. “I try to look at the positives like the fact that it started in my foot instead of in my face. It can start in arms, hands, etc. The doctor told me that, ‘If there’s anything good about this it’s where it started in you because it started in your foot and has to work its way up.'”

Jim’s faith in God’s will for his life has been his rock. “If I didn’t have that Hazel, I’d be a wreck. I know it…If it weren’t for that, I’d be a basket case.”

It also helps that he is not physically alone in this journey. In addition to Sylvia, Kiah and extended family members, the popular columnist, speaker and author of four books has scores of friends and thousands of fans. They include His lifelong pastor and his new pastor in Greenville. Both marvel at how Jim Clingman is handling this.

“I remember when Jim decided to give his life to God. It was on a Mother’s Day,” recalls Richard A. Rose, Sr., then pastor of Gray Road Church of Christ in Cincinnati. “He came down that aisle at church and never looked back,” Rose recalls that moment 17 years ago. “He became a teacher, he even delivered sermons in my absence. Wherever he was needed, he was ready. There was no job too big or too small. So, he’s the leader in that family when it comes down to the faith. His faith will help Sylvia and help Kiah.”

While leaning on God for his future, the blessing is also in the life that he has lived and continues to live, says Rev. Rose. “Everybody in Cincinnati knew who Jim Clingman was. He did so much for so many people. And, so when the doctor’s first told him that he had ALS, it kind of set him back a little bit…But, God is greater than any doctor, than any degrees, and if it is not his will to deliver you from it, he will give you the strength to take you through it.”

Now attending Grace View Church of Christ in Anderson, S.C., Clingman has remained steadfast in service.

“He’s not wavered in his faith at all,” says Grace View pastor, Bryan Jones. Clingman even preached at his church earlier this year.

Seated in the pulpit, he encouraged the congregation with the message titled, “Tickets Please”. From Hebrews 9:10, it was about “how Christ died once for all. Everybody has a free ticket,” Clingman recounts.

“There’s been some challenging times in which I would see him high and see him low,” says Jones. He calls Clingman his “hero” because of his thoughts of others in the midst of his own trials. “Every time I saw him have a weak moment, it was never because of his own personal illness or health. Any time he’s ever been down, it’s always because of the pain he has because of his family having to deal with it. Not himself.”

A major part of that pain has been his concern for their beloved Kiah. Always a daddy’s girl, she too was naturally devastated by the diagnosis.

“My Dad actually tried to hide it from me for a while,” Kiah recalls. She was about to leave for London for an educational endeavor in the fall of 2013 when she found out from a relative who mistakenly let it slip out during Thanksgiving break.

“I didn’t want to go anymore,” she recalls. “After I read the diagnosis two to five years to live immediately what was going through my mind was he’s had these symptoms for two years now so how long does he have left? That was the only thing on my mind.”

Fast forward through the tears, her parents convinced her to go to London. Eighteen months since the diagnosis, his faith has indeed encouraged the entire family.

“I guess my Dad has actually been the reason I’ve been able to keep going, keep fighting, his resilience, his drive,” says Kiah. “My Mom and I have no choice but to be strong for him and sometimes it feels like we have ALS. But, his drive to keep going every day is what keeps us going.”

Like her father, Kiah is also a fighter. When the Veteran’s Administration turned him down for assistance, she persisted, searching the Internet and making phone calls until she found someone who would listen.

Finally, Clingman, a veteran of the U. S. Navy, was informed that he would receive full benefits.

That moment was part of an answer to his prayers that his wife would never be saddled with debt because of his illness. His other greatest concern is still in the works.

Now, his heart’s desire is to “Get Kiah off into her adult life and to be there when she graduates” Saturday, May 9, 2015. “I’m praying that my strength lasts at least until then because I don’t want to be there so debilitated that the focus is on me rather than her and her achievements. Then, I want to see her on firm footing as she moves into adulthood.”

Meanwhile, America is to hear much more from Jim Clingman. He has just completed his fifth book, “Black Dollars Matter! – Teach Your Dollars How to Make More Sense.” And he continues to write his Black press column, “Blackonomics”, which he also posts on his website, Blackonomics.com.

No matter what the doctors say, this family still has hope. “The doctor gave me a death sentence, but God has already given me a ‘Life Sentence,’ and enternal life sentence,” Clingman said.

“I never refer to it as false hope because God can do anything,” says Rose. “There is hope, the hope in God. Any hope that you have is not in science, but in God.”